Hospice Horror Stories

As ever, I provoke. In comments on Dethmama Chronicles I've pledged to share my hospice horror stories. First, I must say hospice is important and good. I believe a good death is possible, I believe hospice is an important player and partner as we talk about reforming health care in America, and I refer folks to hospice in general whenever I can. Dorcasina has discussed it so much more wisely and clearly than I can:

"I know that in retrospect, survivors are grateful for the slow easing away that hospice can provide; glad that they didn't abandon their patient to the studied impersonality of the hospital room, grateful for those moments of quiet hand-holding amid the medical turmoil that accompanies changes in states of being. But the anticipation of loss is unbearable, the opening up of an abyss of sorrow and terror. I have had to remind myself that suffering now is not preventative; this future loss will be no easier for the grief we are feeling today."

The day I signed Gavin into hospice I had to pull over on the parkway to cry. I had been screaming inside for days. And yes, I was grateful to not keep escalating the medical farce and to begin to understand, to let go, to let in things that are so much terribly larger than I could understand. BUT. We had some astonishingly insensitive experiences in hospice*:
  1. The M.D. in hospice stubbornly refused to believe that I was Gavin's wife, not his daughter. Yes, he's 20 years older than me, but I said it several times and pointed at Short Stack, and he kept going. "But the file says his daughter...." His apology? "Oh, I thought because you are so young... " Yeah, duh, the word is "sorry."
  2. The staff didn't treat me as single point of contact, and followed conflicting care orders from my very anxious mother (who had a valid concern, but one that was manageable) rather than checking with me or containing her.
  3. They did not know how to deal with his pacemaker/defibrillator. There was no plan at intake. I understand that this is a lack of protocol throughout the "system," but it could have been really traumatic and we should have received guidance -- we should not have had to initiate the topic on his last day and rush the Medtronic rep in at the last minute. Talk about deus ex machina...
  4. Gavin died Friday evening. The social worker called me first thing Monday morning and said, "Well, that sure was quick!" I understand these things are not predictable -- I know they did not anticipate how quickly things moved for him -- perhaps it was her form of apology for not being around at the right moment -- but Lord, this is a very very offensive thing to tell a fresh widow.
  5. The other social worker, who may or may not have apologized for the other one, asked me in a session if I'd read "The Year of Magical Thinking." (Yes, I could benefit from reading accounts of grieving, maybe Kubler-Ross,** but to suggest I read a book where the author loses first husband then child...?) I recoiled. "Of course not."
  6. The staff managed to lose the bag of cassettes, pictures, and treasures from his room that I had left behind that night. Did they really think I'd want to pop back over there quickly? They were dripping with volunteers who could have delivered it before it got "lost" (or insufficiently sought).

Yes -- I hear you -- there is no good way. Yes, much of this is my projection or transference or something. Maybe I'm blaming the messenger. Maybe I was too nuts to do anything right. I certainly could not handle details, or care, or emotions, or my family members. BUT STILL. Isn't this pretty bad?

* Everyone in the ICU and the hospice salesperson, I mean intake person, really pushed me to go to inpatient hospice, a lovely small facility. Of course, I thought they wouldn't have room for us, it was very exclusive all their literature really discouraged one from applying. Like the Seinfeld: "If you're thinking of getting a place [in Tuscany], don't bother. There's really nothing available."

Oh -- but those rooms are reserved for people who aren't expected to last more than two weeks. We couldn't possibly take it. He should have another few months, he's been living with all these problems for nearly two years now! And he's very motivated. And he really wants to come home.

The small number of rooms dovetailed nicely with my general feeling that I'm excluded from the good stuff.

"We think he's a good candidate for inpatient services."
"But what about the two weeks thing?"
"That's not important. It's the right thing for him."

Then I think of what they were looking at -- me, desperately looking for another solution, defending the new med, seeking whole brain radiation for two tiny asymptomatic mets that were not the problem, helpless without a real doctor (ours didn't have rights there), deny deny deny -- me with a small child, still trying to work, managing his mother, with so little help... -- I know the truth was that they knew I could not handle his at-home care even with their help. And since I still thought it would be a few months of this care with only limited support from hospice, friends, and family -- and him, contagious with shingles, with a 2 year old and several seniors underfoot -- him, severely hypoxic, too weak to get up from bed -- I believed them.

Of course they were right. But if I'd known it would be just three more days?

** Dorcasina's quote brings up an element of grieving that I would not have guessed: Kubler-Ross says that it's a hallmark of grieving to think there's a formula that you are not following -- a general sense of deficiency, that maybe there are rules you don't know or understand -- and it was an immense relief to me to learn this, when I finally did, long after one year had passed.

* * * some comments * * *


hahamommy said...

hey wait! I lost a husband and then a kid and no one recommended that book to ME!! Gonna go look it up now... (this might very well be the exact reason it was mentioned to you, back then ::bg::) ♥

hahamommy said...

8 months after DH died, his oncologist (who's receptionist had sent an immediate sympathy card) sent a form letter, explaining that he didn't send his condolences sooner because his business was expanding and he took a 6 week cruise with his wife and family. Nice, huh?
I was apparently more offended than anyone I showed it to... then again, I didn't show it to another widow ;)

Supa Dupa Fresh said...

Examples of poor bedside manner are a lot of fun. I always say if MD's want to reduce their malpractice suits, they should stop stocking magazines about luxury travel and yachts in their waiting rooms.

Actually, my minister has spoken about The Year of Magical Thinking several times and I might be ready for it now, it seems to be an insightful book, but it seemed a terribly bad suggestion at the time.



Christian Sinclair said...

Ack! I typed in a huge long comment and it never came up. Oh man. Will have to get to it tomorrow when I have some more sleep.

Basic gist was - criticism and feedback are good things. Even for things like hospice that have a (on average) high satisfaction rates. I plan to take these to my next team meeting and explore it with them on what potential improvements could have been.

J-in-Wales said...

Some of those are breathtaking in their crassness. Number 4, in particular, makes me want to go and thump someone on your behalf.
R's stay in hospital was relatively short, and I only have praise for the care he and I received - even the 'It really is time we switched him off' conversation was handled with the utmost sensitivity and tact.
In contrast the Registrar with whom I registered his death was truly appalling - if I had my way, she wouldn't be allowed within 100 yards of a recently-bereaved person. Still, it always helps to have someone to hate at times like that!

Unknown said...

Just lost my dad, and he was only in hospice a few days, i am so disgusted with the care even though rest of family isnt. A couple of examples are right before he died the hospice lady came in the room and told my dying father that he was doing so good, like she was a darn cheer leader leading him to death. After he died she listened to his chest and says oh yeah i want to tell you he still has a heart beat from the pacemaker, something in our grieving we did not need to know. While he was there i saw him have one dinner tray, they would wait till he was nearly asleep and ask if he wanted to eat of course he would say no, but they would not ask again dad exsisted on icecream that we would get for him.. Also one of the volunteers brought the candle, memory book etc. into the room and dad was still fighting to live, then one of the ladys had her take it back out. Oh and one more thing they assured us they would call if there was any change in dad, my neice sat there at the hospice and she thought dad was sleeping, we didnt come to the facility until later in the afternoon dad passed a couple hours after we got there, but no one had told my neice or anyone that mom needed to come because dad was not going to last.. Well thats just some of my concerns i have told my children to never put me in one of those places, i feel they hastened my dads death. Diane Greene

Supa Dupa Fresh said...

I'm so sorry to hear you had a bad experience. Losing someone is so hard. I have to say that in my case everything would have been MUCH worse in a hospital, particularly since our daughter was not allowed to visit the Cardiac Critical Care Unit he'd been in (they let me sneak her, but it was limited).
Do you feel that your father's passing would have been easier for your family if he'd been in a hospital setting?
We're each so different, and hospice has the challenge of meeting the needs of the entire family sometimes.
Thanks for sharing your story, I hope you find the grief blogs and resources helpful to you. It's never easy.

Anonymous said...

Here is one- I am an rn. My husband was in hospice within a day of dying from aml. The rn looked at him and said to me-"can't be long now, just look at him!!"...wow.The same rn , the next day, proceeded to tell me all of the gory details of how my husband bled when she suctioned him. I was so disgusted I could not look at her. How rude, how sad she could not see him as the love of my life, not just some dying patient.

DharmaDog said...

My husband had hospice care the last two weeks of his life. There were some things that were done well but overall, I don't think I would want to have this experience again.
My husband's family would not leave us alone the last two months of his life. I had someone from his family there all the time and the stress on me and my sons was incredible. My SIL would argue with the hospice workers over the care that they were providing...or should I say they basically gave us the supplies and instructions on how to care for him and then let us twist in the wind until it became apparent that we weren't up to the task. John was incoherent and incontinent and up every 10 minutes before they realized that he would have to go to the inpatient facility. An ambulance came and took him away and then died there about three days later.
I remember having to call and BEG for them to take him. John's family was insistent to the end that they could care for him. One night I left the house with my sons and stayed at a hotel as my youngest child was suicidal from the stress of watching his father die. After being alone with him overnight the light went on, and what needed to be done was taken care of.
I found the hospice workers patient and caring for the most part but completely perplexed by my needs and the needs of my sons. I felt they forced contact on us we didn't want and couldn't handle. John pushed me away the last month of his life and we had said all we needed to by the time he went to inpatient. I wanted to be with him but the children were more important, yet the hospice workers pushed me to spend time with him when it was clear that I wasn't able to physically or emotionally. I don't feel I missed anything by not being there when he died...maybe that makes me cold, but after dealing with his family I had reached my limit.
Hospice had their own bereavement groups at the facility but I had no desire to attend any of them as I didn't want to go near the building again. I will be happy to never be near that building and I am planning on moving out of the area and the house where my husband and I lived. Too many bad memories.
The absolute worst was being encouraged to sit with his cancer-ravaged body after he had died. They did not close his mouth or eyes either. I will never forget that.
Hospice has it's place but I will be happy to never have to go there or work with them again.

Supa Dupa Fresh said...

Anonymous RN: I'm so sorry, this is so insensitive! I hope you let the organization know of your feedback.

DharmaDog: I'm sorry to hear of your experiences too. I wonder what would have been different in a hospital death... no social support at all, but no pushing you together, either. I'm sorry for your loss.

Please keep in touch and let me know if I can help connect you with peers or resources!

Hugs to you both!



Anonymous said...

I thought I was the only one who had a horrible hospice experience. The social worker who came with her to-do list, asking my husband if there was anywhere he wanted to travel. Yes, he would have loved to, but he was TOO SICK! The chaplain, whose spiritual support consisted of giving me a list of funeral homes. The medical transport driver who wanted to flag down one of our neighbors to help get my hallucinating, incontinent husband into the van. So much more that I could tell. The sad thing is that I think hospice was the best option in a terrible situation.

Supa Dupa Fresh said...


I think those are some areas (social work included) that are often weak in hospice, but like you say, I still think it's the best option.

While I advocate for hospice, I'm still far from being comfortable with ANY ways to cope with dying. I just know THEY can be comfortable with it and their culture really is the best fit for most of us.

I also take comfort in knowing that hospice as a movement is working to improve support in these areas -- there are terrific people working in hospice and working to improve the care it offers.

Hugs to you, thanks for joining the conversation!



Anonymous said...

My hospice experience included 5 different nurses in 6 days. The first nurse ordered the wrong suction machine and then tried to hook it up with some tubing from her car that did not work. Then the substitute social worker wanted to talk since the real one would not be back for two days- my answer- have her call me when she can rather than taking the time to repeat everything to someone who was filling in.

Supa Dupa Fresh said...

Anonymous, I'm so sorry for your experience. Thanks for sharing -- and I hope you've let the organization know of the problems you had?

Mary Francis said...

Is anyone ever truly ready to die? I once asked Jack if he was ready to die and he
told me that he was. Most of the time that he was in the hospital he shared a room
with a Christian. When he died I believe that he understood what was happening
to him and through his faith he would be ok.
The hardest part of the whole process was the last week of his life when he went
into Palliative Care. Jack was peaceful and content in the hospital because even
though he was in a lot of pain he felt safe there. We played a lot of spiritual music
and everybody was there for him. The first day that we were there the head nurse
and doctor asked to speak to me. We went into another room where they said
that they didn’t think that I understood what Palliative Care was for. I said that I
thought I did, but they could tell me.They said, “It’s for people who can’t handle it at home and to give the
caregiver a rest.” I understood that, but I got the feeling that they didn’t want
Jack there. The following day when I went in the same nurse told me that I had
to take Jack home.
I questioned, “What’s the difference between my husband and everyone else
that is here?” But she didn’t answer me and I think they wanted the bed for
someone else.
I pleaded, “My husband doesn’t want to go home because he feels safe here.”
Jack had been on morphine for the last two weeks and everyone knew his time
was coming to an end.
She insisted, “You’re going to have to take him home.”
I replied, “Then you will have to tell him because I’m not.”
She said, “I get the feeling that you think we are trying to push your husband out.”
I answered, “Yes, I do feel that way.”
She went into Jack’s room and told him, “We are going to send you home.
How you feel about that?”
Jack was on heavy morphine and was groggy in thinking, but he answered, “I
don’t want to go home.” She ignored him, “Well you have to go home because
there is nothing we can do for you here.” My biggest regret is that I did take him
home. I should have put up a fight instead of giving in.
We brought him home Thursday by ambulance and he sat for a long time on
the couch and didn’t move much. Monday when the VON nurse came to the
house, Jack had gone into a comatose state. She called the ambulance and the
hospital found a bed in the heart unit for him. The next morning the head nurse
from Palliative Care and the doctor came into the room to talk to me.
They asked, “Would you consider taking your husband back to Palliative Care?”
I rebuffed them, “Never. He’s not going back there.” He died that night in the
heart unit. Palliative Care was the worst because I felt he should have been able
to stay when he didn’t want to go home. I don’t know why they pushed him out and I can’t let it go. I don’t have the answer and it still bothers me to this day. He
was only in Palliative Care two or three days before they sent him home. Palliative
Care made him go home Thursday and he died Tuesday. I know others that have
been there for months, but they couldn’t keep him for a week. My family doctor
said that I should go talk to someone to get some answers, but I never did.

The above is one widows story from the book "The Sisterhood of Widows".

Supa Dupa Fresh said...

Mary, thanks for sharing your story. Or is it someone else's? Either way, thanks.

Anonymous said...

I would like to share my recent story regarding my father's hospice care. He had COPD, a chronic lung disease, and has been living with me for the last 6 years. During his last visit to the hospital, it was decided that hospice would be his best option, since there was nothing that could be done to strengthen his lungs any longer. WE signed him up, and he was ready to come home on hospice in a few days. We did not have a hospital bed at home yet and my children and husband were all very ill, so instead of him coming directly home, I was talked into letting him go for a short stay at the hospice center, a beautiful new facility. He went in on Friday, and everything was to be ready for him to come home on Tuesday. We saw him Sat, and he was talking ang joking like normal. Sounded a little groggy on Sun, but no concern. The Dr in charge called and advised that they changed his pain meds, from Percocet as needed (which he took about one a day), to morphine as needed. Then that changed, to morphine every 4 hours.On Monday, he was in a drug induced sleep, so badly that when I called to talk to him, he could not be roused, and I actually questioned wether they gave me the right room. I was assured by the Dr, that his condition was stable, and that he was not "imminant". Now for some background, ppl with COPD cough constantly to clear their lungs.... while drugged, he could not wake up enough to clear them, and they quickly filled with fluid. I got the call from the center @ 1 am Tues morning to gather the family. He died on Wednesday, all the while fighting terribly. It was the most horrific thing I have ever seen. While the staff at the center was kind and caring enough, In defintaly feel that they expedited my father's passing

Supa Dupa Fresh said...

Anonymous, I'm so sorry for your experience. I assume you've given your feedback to the medical staff at the hospice center?
HUGS and I'm so sorry to hear of your loss.

Anonymous said...

Thank you. I have not contacted the center yet. It is stil too fresh. My father just passed last Wednesday, and I feel as though I would lose it and not be very professional if I called now.

Marlon said...

It is sad to hear about your stories with hospice and also for your loss. IMO, I think in selecting a hospice care, we need to make sure to choose a company that has good reputation and positive feedbacks.

Anonymous said...

I'd like to comment. I am a looooong time hospice nurse and specialist. I'd like to start off by saying that a lot of what is posted here seems to be extended grief due to lack of education. I will first make it clear that the use of morphine sulfate does not expedite death. It is a pain medication, it is also used for respiratory distress relief. That's all. People believe that every hospice uses morphine to "kill" people, and that is not at all true. Short acting morphine is also often lamed for causing "poor response" or "coma" which is also not true. As people experience physical deterioration, organ failure, and chemical imbalance due to imminent death, AMS and poor respnse are common. It is very rarely medication related, yet medications get he blame because "something must be causing this sleep" comes to mind. People NEVER die like what you see in a movie. Hollywood has ruined our perceptions. It is common for individuals to be unresponsive for over a week before death. Congestion is also common in nearly 50% of deaths. When someone is pronounced dead, their heart is no longer beating despite a pacemaker. Pacemakers don't sustain life in that respect. Hallucinations happen sometimes, and it is often NOT medication related. It is also a violation for nurses to "update" family members about patients unless approved by the poa or patient...so please understand that. Hospice is truly amazing, and don't let a bad experience convince you that nurses like me don't do amazing work.


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